Fatigue crashes

Allergies, blood and immune system
1

Hi just wondering how many others who may have possible autoimmune issues suffer fatigue crashes? These are periods off fatigue above the normal where you feel the energy zapped from you. Like there is no more petrol in the tank.

I'm unsure what's the cause of my debilitating fatigue crashes but I've began to understand some triggers. My work being one of them due to the shift work causing extra tiredness  and the stress of dealing with challenging behaviour in children certainly doesn't help. Although I'm also experiencing several other symptoms that I have mentioned in other posts.  

 Fatigue in legs and arms, pins and needles in legs hands and feet especially when sitting or lying down, brain fog, wooziness, slightly unbalanced, and some others.

I couldnt push push through anymore as these crashes were becoming more frequent and lasting several hours. I was unable to function after some shifts and feeling so ill I could do no more than sit and cry.... I hated feeling like this so I eventually went to my doctor and got signed off initially for 5 weeks. 

Im just so unsure where to go. The fatigue unless balanced through diagnosis of some description won't just go away.

Im worried I'm doing more harm continually pushing through like I did.

im trying to walk most days and attempting to get back on track with my healthy eating but at only 38 feel like my life should be more than I'm able to do right now. I'm struggling and worried.

im awaiting a contrast MRI on the 17th of next month which has took months to get and I'm finally been referred to rheumatology although that'll take months aswell and I'm not convinced they'll see autoimmune anyway as my bloods for ana were negative.

sometimes I think it's been something keft behind by a virus and no ones going to get to the bottom of this. My neurologist and dermatologist both said similar that there may be nothing to find and it's just one off these things..... not that helpful when I feel positively vile sometimes. 

Tracy

2

The rheumatologist will get to the bottom of it Tracy keep pestering your GP and you'll get seen sooner rather than later.

Tell him your becoming a danger to yourself. ! !! 

3

Thanks Steve, I'm just not so sure if there's anything to find. My bloods and tests so far have came back within the normal range. Whatever this is it's a frustrating thing to have developed. 

I thought post post viral and possibly Developed n to CFS. Gp said that the tiredness would have eventually have disapated if it was linked to viral and mine hasn't, ... yet.

the weirdest symptoms on top of the tiredness is the wooziness, brain fog etc without there being an explanation. ENT ruled out ears and neurology have just about ruled out anything neoraligical. It's really odd. I guess that's why they thought virul.

when I feel pretty good I try and get on with things and rest up when I can't. Not a great way to live your life but it's veg learned to limit myself.

Tracy

4

Tracy, I have these fatigue crashes most evenings. I am usually fine during the day but getting progressively more tired during the afternoon and then in the evening, the batteries go flat and I only want to go to bed and lie down. Frequently this is accompanied by some nausea. Feel quite tearful at times as it is such a horrible feeling.

​Marian

5

I have fatigue crashes nearly every day and usually accompanied by varying degrees of nausea. The morning is usually fine and things go downhill after lunch by evening the batteries are flat and all I want to do is go to bed and lie down. Reading is a problem then as I feel out of touch and fuzzy. 

I have spoken to my rheumatologist and think she has reached the end of what she can do for me. She hasn't had any real solution the last two times I have seen her. I have the feeling she doesn't really know which way to go now.

I am going to see my GP and discuss this with him with the hope he might have someone else to recommend to me. 

Marian 

 

6

Now that im off work the crashes aren't as prominent as they were. I just have my normal level of fatigue. Which let's face it are higher for all off us people with suspected autoimmune.

My wooziness and brain fog are still around and the normal aches.

Luckily I've managed to get a cancellation for my first rheumatology appointment this Tuesday.

I don't know what to expect. I'm assuming a physical exam will be undertaken and hopefully some bloods and I've written down symptoms eye in a notebook to relay and took pictures off rashes etc.

I'm worried that im dismissed because my symptoms aren't progressive enough for an actual diagnosis.

This whole thing is so draining. This appointment us my last hope I've been everywhere else.

7

Hello Tracy,

​I don't think your be dismissed because your symptoms aren't progressive enough. I certainly didn't have many except for the leg pain.

Your rheumatologist will probably be very sympathetic.

​It is a good idea to have notes on the  problems and pictures of rashes,it all helps the doc to diagnose.

​It is a draining complaint to have ; never ending really. The treatment is mostly palliative and one has to live with it.

All the best for Tuesday.!

8

Hi Marian can I ask what your diagnosis is and about your symptoms. If you don't mind sharing them.

Tracy

9

Hello Tracy, 

​I have been diagnosed with Sjogrens syndrome. When I first went to see the rheumatologist al I could tell her was that my legs hurt, I felt faint, tired, sick, just dreadful all the time. The leg pain was so severe I couldn't sleep; it was driving me mad. The doc gave me Tramadol which helps She put me through a series of tests, eye tests, biopsy of mouth mucosa, blood tests, x-rays and an MRI. The last two were negative but the others showed that it is Sjogrens. 

​I don't have the dry eyes or mouth problems but my eyes do get sore at times and my mouth supersensitive. Fortunately neither of these problems last too lo​ng. 

I take Plaquenil 200mgm twice a day as well as the Tramadol  and  feel a lot better now except for the heavy painful legs which makes walking difficult and the fatigue.

Hope this helpful, 

Marian

10

Hi Marian. Yes, that is helpful thank you. Think the dermatologist suggested strojens as I mentioned the dentist commenting on my dry mouth as I have extensive gum disease even though I receive regular treatment and having really dry lips a lot. Can I ask what bloods came back positive. I have had ana and anti DNA that are both normal. So they believe it's not lupus?

11

Hello Tracy,

You have similar symptoms to Fibromyalgia.

Or at least you are describing symptoms common with Fibromyalgia.

And when all commonly known Autoimmune/ conditions are ruled out, Fibromyalgia/CFS/ME are often the diagnosis patients get.

I have myself been diagnosed with Fibromyalgia after a 2 year journey of research I eventually came to terms with this condition.

I feel flu like/hung over, pins and needles in hands and feet /tired but unable to rest, cold and often feel like I have a temperature - at the same time.

Foggy head, dizzy, blurry vision, forgetful.

I have neck and lower back pain. Also pain, sometimes flares up through parts of my joints / muscles/ under skin.

I also have digestive distress and intolerant to almost everything I consume which is developing into strong smells - eg. I can't tolerate deodorant/perfume.

Sometimes loud noise, crowded places even touch is uncomfortable and stressful.

My eyes often smart, a little like when you've been swimming in chlorinated water.

My feet and hands are often swollen and I have inflamation more than not.

Sitting still or standing still, makes my joints stiff, painful and swollen.

Exercise does eliveate this a little, but often it's lack of energy / lethargy that makes it hard to push through and move, walk, stretch.; it's often too uncomfortable to begin with.

Too much exercise wrecks me for days and often I end up sleeping/resting on the sofa totally drained, sleepy, deeply fatigued.

I'm reluctant to say I feel apathetic, tearful and loss of purpose in life because of the 'depression' label that often people are eager to attach the cause of my ailments.

The low mood comes as a by product of the physical symptoms I have; not the other way round.

That's just some of the symptoms I can think of at the moment, but there are many many more.

I don't intend to be so doom and gloom, I have been on a long journey and I know I'm not close to recovery yet, however I have a better grasp on what is causing the random, frustrating and debilitating symptoms.

I have found YouTube to be an incredibly useful resource.

If you feel that Fibromyalgia may be a possible cause or want to know more about things I have metioned/discovered please feel free to ask.

Best wishes

Annette

12

Thank you Annette, that list could be written about me although I don't seem to suffer as much with inflammation of joints more tendon inflammation. 

I actuslly ruled out fibromyalgia due to not seeming to tick the box off symptoms, who knew they were so extensive and wide ranged.

well hopefully I'll know more on Tuesday after my rheumatologist appointment.

thank you for the reply I certainly will not miscount fibromyalgia in future.

tracy 

13

Good luck Tracy, keep in touch and let us know how you get on🙄

Annette

14

Hi

So I've just got back from my rheumatologist who was very thorough but I'm no further forward I'm afraid. 

So she went through my symptoms from my head to my feet then done a little exam on my joints etc apparently she beleives I have some hyper mobility that may be the cause of some of the aches?  

I showed her my pictures of rashes etc she beleives they are non related to autoimmune rather my skin sensitivities die to skin and hair colour etc. Blond hair, fair skin, blue eyed. She believes I'm sun sensitive not photosensitive .

the main thing she spoke about was she beleives most of my symtems were related to not getting enough sleep? I have had suspected sleep apnea on the past but wasn't investigated. And yes I have some broken sleep but didn't think it was enough to cause my symptoms. I guess I've suffered lack of sleep once a week at work, I'm a shift worker and do sleep ins where I very rarely sleep. But since getting unwell they have been few and far between. 

So it looks like I'm off to see a ent again to check my airways etc and a sleep clinic.

she took some routine bloods to keep the case open just until she can refer me on to a fatigue course?. Then she will be closing my case. I'm sure these will come back normal as they were all routine bloods that I've already haddone.  She checked my saliva and my tear ducts. Saliva test was normal but I have dry eyes so she's referring me to somewhere to get them checked out and to get eye drops and things.

ive came away on a completely different route and more than a little confused?. I guess I'm going to have to roll with it I guess.

thanks for all your input x

15

Hi Modelar-

You just described every ailment I feel almost on a daily bases and yep I dont much discuss this with doctors because they tend to want to drug me saying I am depressed. Yes I am but it's brought on by all the other issues. This condition started after a tramatic avent in my life that happened in 2009-maybe that triggered this condition called fibromyalgia. I have suffered with this for almost 9 years. i am now 51 years old and wonder if it will ever disappear. Thanks for posting this and giving it a name -

Best wishes 

16

I'm sorry it's been that long for you.

Stress ie physical, emotional, environmental is a large part of this disease.

For me I believe it to be emotional stress for prolonged period of time, and genetics as my sister has many similar symptoms - we have very different lifestyles ie diet, work etc.

But I had numerous stresses and ignored the signs of fatigue and ibs And the gradual worsening of joint pain/stiffness.

I strongly feel that if I can sort out my digestion and work on my emotions that I have a chance of recovery.

I know it often feels hopeless , that everything you try doesn't work (for me anyway)

I have an appointment booked with a private nutritionist on the 20th of October who specialise in fibromyalgia...I wish it was sooner.

To add to the fibromyalgia discussion , I don't believe I have the true fibromyalgia because I don't feel pain all over, that is , I don't believe that I suffer with a classic central nervous system disfunction.

I believe my symptoms are triggered by an immune response instigated by digestive distress.

Along with emotional stress. I am starting counselling with a therapist that has an understanding in this area.

There's a specialist that discuss the fibromyalgia diagnosis and the confusion over that and other conditions - Dr David Brady - Youtube - is it really fibromyalgia or could it be these other conditions?

It's important you have a correct diagnosis in order to get the right treatment.